When it comes to end-of-life care, psychologists have been virtually absent. Few have ventured into the debate over assisted suicide, and psychology's literature says little about improving end-of-life care. Given psychologists' understanding of human development and behavior, it's a puzzling silence, according to APA's Working Group on Assisted Suicide and End-of-Life Decisions.
Last summer, the group submitted a detailed report to APA's Board of Directors and Council of Representatives, suggesting ways psychology can become more visible in the complex arena of end-of-life issues and assisted suicide and examining psychology's potential roles. In response, APA is now forming an ad hoc committee on end-of-life care--a group that will have the challenging task of prioritizing the issues raised in the working group's report and identifying funding outside APA to implement the report's recommendations.
"We're pretty far behind the times and we need to get up to speed," says John Anderson, PhD, director of the APA Office on AIDS and staff liaison for both the working group and the new ad hoc committee. "This committee is one of the best ways to finally bring psychology to the table, in terms of training, research, practice and advocacy."
APA is now seeking members to join this committee who have an interest in end-of-life issues (see endnote). The deadline for applications is Jan. 22.
A need for psychology
Experts predict that by 2050, one in five Americans will be older than 65. As more Americans continue to live even longer, patients and their families will grapple with end-of-life questions more frequently. That translates into an increased demand for psychosocial services not only to assess patients' cognitive abilities, but also to help patients, families, caregivers and policy-makers through the decision-making and grieving process.
"This is territory that psychology knows well--the territory of individual choice and the sacred decisions of life," says Judith Stillion, PhD, a working group member and director of the Center for Active Retirement Education at Kennesaw State University.
But even though psychology is well-qualified to contribute to end-of-life issues, "We haven't done a good job of letting people know what we can do and how we can help," says James L. Werth Jr., PhD, another working group member and assistant professor of psychology at The University of Akron.
For example, there's no mention of death or end-of-life decisions in APA's accreditation guidelines for psychology programs or in APA's Code of Ethics, and APA journals have published few articles about end-of-life issues and assisted suicide. No psychologist has provided testimony to federal legislative committees involving end-of-life issues.
For all, much to learn
To document the ways that psychologists can contribute to the field, the working group's report points to a 1997 Institute of Medicine report on end-of-life issues, which found that:
Caregivers frequently fail to provide palliative and supportive care known to be effective.
There are significant legal, organizational and economic obstacles that interfere with excellent care for the dying.
Health-care professionals are not trained with the knowledge, skills and attitudes required to care well for dying patients.
Existing knowledge on how people die and how to meet their needs is inadequate.
Most Americans have not yet learned how to confront and discuss the topic of death and dying.
The APA working group sees great opportunity for psychosocial research that would address these deficiencies in palliative care. Some of its research priorities include studying the emotions and behaviors of the dying and their interactions with family and caregivers; researching how diversity factors affect the dying; refining assessment tools for older and dying people; evaluating existing psychological services; and studying the effect of caregiver burden on end-of-life decisions.
But it's essential for psychologists to begin educating themselves, says Judith Gordon, PhD, working group chair and a clinical professor of psychology at Washington University. For example, in addition to including death and dying in university course work, the report strongly recommends expanded continuing-education opportunities on the topic.
And psychology can learn from professions already working in end-of-life care, such as social workers, nurses and physicians, says Gordon. Collabor-ative efforts with other disciplines will not only increase the quality of patient care, but help psychologists get up to speed.
"It's especially important for psychologists providing direct service to be knowledgeable because eventually they will all be faced with death and dying issues affecting clients," Gordon says.
She adds that psychologists should be aware of their own beliefs and cultural influences, which could affect the counseling of patients coping with end-of-life issues and assisted suicide. Because many therapists have limited experience in the area, they should be alert to the limits of their expertise and make referrals when appropriate.
Not for, or against
Acknowledging that assisted suicide "promises to become one of the most contentious and difficult issues of our time," the working group's report also calls for research on whether and how assisted suicide can affect the timing of death and seeks an examination of the impact policy changes could have on disadvantaged groups. Gordon also emphasizes the need to study whether traditional suicide attributed to psychiatric reasons differs from assisted suicide for terminally ill adults.
The U.S. Supreme Court has ruled there is no constitutional right to assisted suicide, but states can decide whether to legalize the practice. Currently, Oregon is the only state to legalize assisted suicide. Maine's public initiative to legalize assisted suicide was defeated in November by a narrow margin. However, Alaska's Supreme Court is deliberating on the issue, and Hawaii and California have recently considered measures patterned after Oregon's Death with Dignity Act. That act, first implemented in 1997, permits physician-assisted suicide under limited, carefully specified conditions. In its first two years, approximately 40 people died after receiving lethal prescriptions.
Studies of the Oregon act have produced mixed findings. Advocates say Oregon's safeguards work and those who carried out assisted suicide did so in a thoughtful, deliberative manner. Opponents suggest that it is difficult to guard against cost-cutting efforts that could end the lives of the disadvantaged prematurely and that the desire for assisted suicide would end if the terminally ill had stronger psychosocial support.
After scrutinizing the available information, the working group, which also included Silvia Canetto, PhD, Dolores Gallagher-Thompson, PhD, and Therese Rando, PhD, decided endorsing or opposing assisted suicide would not reflect the opinion of psychology as a whole.
However, Gordon stresses that the recommendation is not for neutrality. "It's to explore and shed more light on the issues involved."
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